Unrest - reviews and general articles

Thanks, Allele, Glad you enjoyed my review. I think perspectives on ME - undoubtedly - vary according to how long you have been ill for and this is what I wanted to show in my review of the film. Also, as a patient who was diagnosed by a consultant neurologist via immune profiling, muscle biopsy and EMG - a true ME specialist - in early 1984, my experience is different to many, I think.

 

Great article today from NPR:
"Unrest" Director Turns Camera on Herself to document Chronic Fatigue Syndrome

Tells Brea's story, about ME in USA, about funding for research, facts about ME, inputs from dr. Nancy Lee, the IOM-report..
Links to Brea's TED Talk, article about the IOM-report and an article about CFS and harmful exercise.

Edit to add: Radio feature from NPR on Unrest
"Unrest" Film Sheds Light on "invisible" Chronic Fatigue Syndrome
About the film, interview with Jennifer Brea. Duration: 11 minutes.

 

is there, or can anybody supply in his or her own words [very rough description is ok], a list of symptoms [and maybe signs] portrayed in the movie?

i asked this elsewhere, but this seems to be a more appropriate thread. i'll delete there.

 

I heard that! So wonderful to have her on a major 'serious' news outlet.

 

I'm sorry I forgot to answer you in the other thread.

I don't recall much but I know she showed herself unable to walk, tolerate noise, light, touch. She talked about how her brain felt like it was misfiring. She showed herself unable to talk, and mentioned not being able to write her own name.

She showed Karina's story (but cant recall if she mentioned her symptoms or just the circumstance) and Jessica who was shown unable to walk and having a seizure from the effort of standing up for the first time in years.

Maybe someone else can help bc I'm having trouble remembering even though I"ve watched it twice :/
There was a lot more.

 

Sometimes Jen couldn’t move. But her condition seemed to be intermittent because when she went to the desert she seemed healthier.

 

Or there was something about the desert that made her symptoms go away?

 

@Samuel

She was in incredible pain and Omar had to lift her from the wheelchair and lay her on the ground. The pain continued and Omar tried to relieve it by gentle massage.

As well as having no speech, at times her speech was distorted. She tried repeating a syllable several times.

She had spells of having fewer symptoms when in a tent in the garden and was obsessive that nothing that had been inside the house should go in ( pollute) the tent.

She felt healthier in the desert.

I think it was Dr Enlander, NYC ME physician, (although he wasn't named) who was shown in a consult with her where antivirals were prescribed.

She was shown making a dramatic improvement after ? 2 days of antivirals. ( Please can someone check this because it just seems too fast - no herx etc)

Complete exhaustion-she referred to having not been able to have a bath for days and gestured towards her hair.

Days in bed, able to work on her laptop, but reclining not upright.

Needing to use a wheelchair pretty consistently.

Having to be taken to hospital as an emergency. Need to tell the hospital enough of her symptoms but knowing that saying too much would attract the label of mental illness.


Please can someone check this list carefully. They are not in the order that they appeared in the film just what I remember.

@Allele and @MErmaid and @MeSci have already posted.

 

Thanks to @Binkie4 for posting that long list! (and thanks to others who posted)

I can't come up with a list of symptoms myself. But I thought I'd post a reminder that there were multiple patients who were shown, mentioned, or interviewed in the film. Shouldn't any list of "symptoms from the film" include symptoms from all the patients?

For example, Whitney Dafoe was included in the film. I don't remember which of his symptoms were specifically mentioned.

Oops, I just scrolled up and noticed that @Allele mentioned Karina and some of her symptoms.

 

From memory Whitney Dafoes main symptoms were severe sensory overload, pretty much all of them, again from memory, with everything causing significant pain, and weakness. I don't remember enough interactions to judge his cognitive state, hopefully, if/when recovery is possible he won't remember much of it.

 

Anti-virals wouldn't cause a Jarisch-Herxheimer reaction. Negative reactions would most likely be side-effects to the drug itself.

 

I wanted to add that the strong scene where she has to be lifted to the ground from her wheelchair by Omar
was intended I think to illustrate to the audience what PEM looks like, as she had just been at a loud, crowded parade/festival, which she had been able to attend (in her wheelchair) due to the positive results of her antiviral tx. She had clearly overdone
and we saw the effect of that in its severity.

 

http://www.redrocknews.com/events/70687-unrest-documents-chronic-fatigue-syndrome

 

Informative article in Deadline about Unrest and ME. Jen Brea tells about being disabled and a moviemaker and her film being shortlisted for an Oscar nomination.

Deadline: Jennifer Brea on How She Directed "Unrest" From Bed: Oscar Shortlisted Doc On Life With Chronic Fatigue Syndrome

Among Brea’s goals is to remove the cloak of invisibility that has left many disabled people marginalized in our society.
“You’re living this experience and you look out in your culture and you see this void. Storytelling is all about telling stories about ourselves to each other and when that gap is missing and someone says, ‘Here. Here you are. Here, you exist,’ that’s a very profound thing,” she notes.

 

My favorite quote from the article...

“Unrest marked her directorial debut, but Brea plans to make more films in the future.”

 

Science Oxford to show Unrest.
"Tuesday, 30th January 2018
6.15PM - 8.30PM
Suitable for ages 15+
£9.50 / £6 (concessions available)

We are delighted to welcome two speakers for our post-film discussion. Karl Morten is an ME/CFS researcher, and is especially interested in understanding the role of mitochondria in health and disease. He will be joined by Nina Muirhead, a doctor specialising in oncology and dermatology surgery who is also a sufferer of ME/CFS and keen to increase general awareness of the illness."

https://scienceoxford.com/events/unrest-screening-upp/

 

Oohh.. many interesting names for the twitter chat marathon today.
If you want to follow it, click here.

 

Just so you know, it did cause herx for me (still does when I take breaks), I felt very fluish, lymph pain... general malaise. I had to lower the dose and was ok. I have a very hyper reactive immune system. I can herx from some teas!!! I have heard others react the same.

 

Found this short discussion following the PBS broadcast:

"
Who else watched that PBS documentary last night about chronic fatigue syndrome? Holy shit.
posted 19 hours 15 minutes ago in Toddler

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25 Replies (log in or sign up to post a comment)

• Tell me about it 19 hr 14 min ago
  • Crushingly sad, what these people go through. No cure. And terrible stigma of people thinking it's mental. 19 hr 5 min ago
• What did it say? 19 hr 14 min ago
  • Just depicted how absolutely horrible and debilitating it is. I had NO idea. This amazing woman filmed herself and others suffering from it so people would really get it. MD's...(more) 19 hr 10 min ago
    • So, what happens? They just never get the rest they need? Why? 19 hr 9 min ago
      • It starts with a virus - everyone who has it says it started then, and then the body just basically cannot fight any viruses whatsoever, and the body is just crazy debilitated to...(more) 19 hr 7 min ago
        • Wow, that's pretty wild. 19 hr 7 min ago
          • It's very sad 19 hr 5 min ago
    • This kind of shit always reminds me of what my mother told me - as a lesson to take "it's psychological" diagnoses with a big dose of skepticism. When she was a teen/college...(more) 19 hr 6 min ago
      • Yes. And autism was blamed on bad mothers! 19 hr 6 min ago
        • Oh, absolutely. Her poor bff from college had a child born with multiple mental abnormalities, and his behaviors are very characteristic of asd. So she got a lot of grief. Until i...(more) 19 hr 1 min ago
• i need to see that 19 hr 13 min ago
  • It really is quite an amazing film. Very hard to watch in some places....(more) 19 hr 9 min ago
    • thank you 19 hr 7 min ago +1 like
• ooh. now i want to see it. 19 hr 13 min ago
• Ooh, I knew a woman who had this. It turned out her husband was wildly abusive. What did the doc say? 19 hr 13 min ago
  • Oh wow. See, this is the terrible shit these people have to face. The idea that its mental (it's not) 19 hr 12 min ago
    • See, that's why I'm curious about the documentary. I was young, but I kind of remember it as the fibromyalgia of its time, where people think you're just crazy, but the pain is...(more) 19 hr 9 min ago
      • I think that they have linked Fibromyalgia to trauma. I don't think they have been able to make that link with this disease which actually is not called Chronic Fatigue anymore -...(more) 19 hr 6 min ago
        • Interesting. I will have to watch the documentary. 19 hr 4 min ago
          • It is pretty gut-wrenching to watch in some places. 19 hr 3 min ago
• i have it. I had no idea there was a documentary.... 19 hr 11 min ago
  • It will be very hard for you to watch, I am sure, but so worth it. I was in tears watching this woman and others suffer. 19 hr 9 min ago
• is it on demand? 19 hr 9 min ago
  • Don't know, check PBS 19 hr 6 min ago
  
  
  https://www.youbemom.com/forum/perm...that-pbs-documentary-last-night-about-chronic

 

The point that Valentijn is making is that whatever reaction you are describing it is not a 'herx'. Herx is short for Jarisch-Herxheimer and is a technical term for a reaction to material released from dying bacterial cells. Viruses are not cells and are not in any relevant sense alive or dead. Antivirals do not 'kill' viruses, they just stop further virus formation. So antivirals do not produce an immediate herx reaction. They may produce an allergic reaction or just an acute chemical intolerance.

So far we do not have any reliable evidence for antivirals being of any benefit ME/CFS so it is reasonable to query exactly the sequence of events people are reporting. But without knowing what virus might be the target of the drug it is hard to predict how quickly one might expect a response.